The worry began pervading Charlotte Cahill’s life when Caya, her jovial one-year-and-three-months-old daughter who adored interactive play and inducing laughter in her parents, started transforming. Her initial vocabulary consisting of words like “Mama,” “Dada,” and “car” waned. Caya became silent, introverted, and the usual lively girl seemed to withdraw into herself. “It was as if my child transformed overnight,” shares Charlotte.
A public health professional suggested Charlotte get a comprehensive evaluation for Caya’s behavioural changes to pinpoint her condition and figure out the assistance she may need to reach her full potential. Yet, three years down the line, the mother-daughter duo are still in limbo, awaiting their turn for an appropriate evaluation.
Meanwhile, Caya’s inability to express herself has led to a spike in her aggression, often harming herself in frustrated outbursts. “My heart shatters when she hits herself against the wall, or when she causes a rupture in a blood vessel in her eye due to punching herself in the face. Her self-harming behaviours have escalated severely,” relates a distressed Charlotte.
In a bid to find help, she even shared videos of Caya harming herself with local HSE staff in Tallaght and pleaded, in desperation, for support. However, Charlotte claims her appeals have merely led to Caya being shuffled from one child mental health and disability service to another.
In the end, Charlotte managed to procure a private assessment for a hefty sum of €1,850. This concluded that Caya was on the autism spectrum and exhibited ‘pathological demand avoidance’, implying that even daily operations could trigger an emotional storm. Recommendations include a regime of occupational therapy, physiotherapy, and speech and language therapy for Caya to help navigate her challenges. Unfortunately, they are still awaiting a complete evaluation.
Despite the waiting, Charlotte hasn’t given up. In an attempt to help her daughter, she has taken matters into her own hands. She has been attending costly private sessions, costing as much as €120 per hour, gleaning advice from other parents, and scouring the internet for guidance. Though she perceives some improvement in Caya’s behaviour, the journey, thus far, has been physically and emotionally strenuous.
She conveys her struggle, as the household tension has led her marriage to collapse. She faces a constant emotional strain in the fight for support, because no one appears inclined to carry the burden of responsibility.
The impact of not receiving pertinent interventions during a crucial developmental stage of a child can be drastic, according to Mac MacLachlan, a psychology scholar at Maynooth University. It could mean the loss of a key chance to acquire specific skills, leading to potentially severe long-term effects.
The Disability Act of 2005 mandates health institutions to finish a child’s evaluation within a half year. Additionally, the child must be issued an assessment report along with a rundown of the assistive services they are due to receive. In contrast with this, the actual situation shows that the majority of the evaluations take a significantly longer time.
Several observers, including parents, professionals and other interested parties, report that children often wait for years before receiving any meaningful contact. It’s widely accepted that the sooner interventions can be started, the more likely it is that children will experience positive results during their early developmental and educational years.
Maynooth University’s psychology professor, Mac MacLachlan, warns of the dire consequences for children who experience prolonged delays in accessing necessary therapeutic services.
Statistical data shows a staggering amount of comprehensive needs assessments still pending – nearly 9,000 to be precise. In response to this massive backlog, a new, more efficient system was established in 2020 by the HSE, intended to reduce the time of each initial assessment to 90 minutes, a stark decrease from the previously required hours of observation and examination.
Significant reduction in the number of unmet assessments was noted as a result of the modified process. However, certain professionals condemned this change as “clinically improper,” a judgment upheld by the High Court in 2022 when it ruled the procedure as non-compliant with disability legislations.
As a consequence, roughly 10,000 need assessments abruptly became invalid, necessitating a reassessment of these children and resulting in added pile-ups.
Katie O’Donnell’s six-year-old son, Charlie, is among the multitudes of children whose evaluation was deemed unlawful by the court. Her primary worry, though, is simply obtaining necessary therapeutic support for his care.
Charlie suffers from poor vision, is incapable of speech, and has a moderate intellectual disability. He depends on his parents entirely, ranging from personal hygiene to meal times and even altering channels on the television or playing with his playthings.
Katie mentions that over the four years since Charlie’s assessment, the support services have essentially been non-existent. She states, “He has not had any session with an occupational therapist or physiotherapist for more than a year, and has only seen a speech and language therapist a handful of times over the past year, largely due to my persistence.”
She believes that Charlie could have had a drastically different lifestyle with proper professional assistance over these years. “The lack of support feels like a punch in the gut, particularly knowing that’s exactly what he demands – and I’m presently unable to provide that,” she says.
As a certified primary educator, Katie has been serving as a full-time carer to her son. She has self-taught some assistance techniques and relies sporadically on private assistance. She mentions the difficulty in finding these professionals, and even when found, they usually have waiting lists.
She comments on the prohibitive costs stating, “A recent online one-hour counselling with a speech and language therapist costed €150 and it was merely for advice on using a communication device.”
In the meanwhile, Katie and her husband strive to keep Charlie busy and engaged, effectively turning it into a full-time occupation.
In the UK, homes are filled with exhaustion and frustration due to the constant activity needed to keep children entertained, due to severe understaffing in child disability services. There is a critical issue surrounding why children with disabilities are being made to wait for the help they need, and the consensus points to significant staffing shortages. Data shows that around 700 positions remain vacant in child disability network teams, with staff shortages of up to 40% in some regions. Attempts to improve recruitment rates have so far been disappointingly sluggish.
Fórsa’s national secretary, Linda Kelly, who represents a large number of the professional staff within these teams, states that several graduating students refuse HSE contracts while seasoned professionals are moving to private practice or quitting the profession altogether. Kellly cites a loss of credibility and trust in the wider disability service’s reforms as the main cause. Despite the logic of the changes on paper, many issues remain unaddressed, raising concerns among staff about the clinical governance, safety, and service delivery.
An academic review of the reforms known as Progressing Disability Service has noted that many children now have lesser access to services and questioned the evidence used to back the changes. It concluded that it might not be an apt model for assisting young individuals with disabilities now and in the future.
Gareth Noble, a lawyer specialising in children’s rights, points out that parents are receiving notifications that it would be 2027 before they could be granted an introductory meeting due to the extreme staff shortages. This has led to a situation in which parents are being clearly informed that there are no available interventions for their children in a number of instances.
The HSE, on the contrary, perceives these vacancies as evidence of a highly competitive global market for healthcare talent with significant shortages worldwide. They draw attention to their “service enhancement roadmap”, introduced last year, which has strong recruitment and retention goals and strives to offer a “quality, accessible, fair, and timely service” to all children with complex needs and their families. They confirm that child disability network teams continue to support over 40,000 children but admit to significant staff shortages, and an increase in children needing support due to complex needs.
Within the HSE, it is well recognised that children’s disability services and early intervention are vital for numerous households across Ireland, the HSE confirmed in a declaration. It stated that the protracted waiting durations for a child’s needs assessment or required therapy is unacceptable. The HSE extended its apologies to families who have encountered difficulties in accessing these services.
There has been some improvement, such as a 28 per cent spike in the completion of need assessments in the first half of this year, compared to the same timeframe in the previous year. They attribute this rise partly to a new waiting list scheme that took effect in late May this year.
The Government highlighted the increased training vacancies in higher education for essential therapists as an indicator of its dedication to this field. It aims to elevate the number of graduates in these domains by approximately 35 per cent.
Stephen Donnelly, Minister for Health, expressed that the intended student expansion in physiotherapy, occupational therapy and speech and language therapy are promising developments, and they anticipate announcing further places for other disciplines shortly.
However, most experts concur that a significant surge in therapists, as well as interventions to tackle what some describe as a “morale crisis” in services, are direly needed due to the high turnover and burnout rates. Many are calling for an extensive review of the current reforms by the National Disability Authority that takes into consideration the opinions of all professionals and affected families.
Five-year-old Caya doesn’t have an intellectual disability and she is capable of learning and making tremendous progress. This intense struggle with the current situation makes it increasingly challenging. Despite her imminent transition into primary school, her mother has so far been unable to secure a place for her, mainly due to the lack of a comprehensive needs assessment from the HSE for Caya – three years after initially requesting one.
The mother recounts applying to 32 schools, all of which either rejected her application or placed them on waiting lists. As per the current prospects, Caya might have to endure a third year of preschool while her peers move ahead to primary school.
Her primary point of respite, she indicates, was delivered by fellow parents, via communities like Families Unite for Services and Autism Parents Ireland, rather than from formally recognised routes. The most exasperating aspect, she shares, is the fact that Caya has the potential to make monumental progress with the appropriate backing.
“Caya does not suffer from mental impairment; she is capable of both comprehension and education. She possesses the capability to make significant headway – and that’s what makes all this more trying to grapple with. It’s alike with numerous children in her situation. They’re being deprived of their latent abilities,” she exclaims.